Introduction
This booklet has been written for patients who are having total body irradiation (TBI) for a haematological cancer. You are having radiotherapy as part of your treatment regimen for a bone marrow transplant (BMT). This booklet explains the side effects you may experience during and after treatment, and how best to cope with them.
We understand that this is a worrying time for patients and their families.
We hope this booklet answers any questions you have. If you still have any questions or concerns, please ask. We are here to help.
We want to involve you in all the decisions about your care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to having the procedure and understand what it involves.
Staff will explain all the risks, benefits, and possible alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please do not hesitate to speak to the team looking after you.
During your time with us we aim to provide the highest standards of care and support you in your decisions regarding your treatment. We will respect your dignity, individuality, and personal preferences.
Your care will be managed and given by therapeutic radiographers, doctors, and nurses. You will meet both male and female healthcare professionals during your treatment. If you have any concerns about this, please talk to the radiographers about it. We try to be sensitive to your needs, so please do not hesitate to discuss things with the team caring for you.
Radiotherapy appointments:
All take place in the Radiotherapy Department, basement floor, main UCH hospital building.
TBI is used as part of the regime for high dose treatment to prepare the body for a bone marrow transplant. The radiotherapy is used to:
- Help get rid of the existing bone marrow to make space for the transplanted marrow.
- Try and kill any malignant cells that have not been killed by the chemotherapy.
- Suppress the body’s immune system and reduce the chance of rejection of the transplant.
Radiotherapy is the specialised treatment of cancer (and some other diseases) using high energy radiation beams. These can either be photons (also called x-rays), electrons or protons. Photons and electrons are delivered from a machine called a linear accelerator whilst protons are delivered from a machine called a cyclotron.
University College Hospital Trust is one of two NHS proton beam therapy (PBT) centres in the UK, alongside The Christie in Manchester. Proton beam therapy (PBT) is an advanced form of radiotherapy. However, it is not appropriate to treat all tumours with proton beam therapy. The most appropriate treatment for you will be decided by your clinical oncologist and discussed with you.
Radiotherapy does not hurt, and it will not make you radioactive. You are completely safe to be around partners, family, friends, and pregnant women. You will feel nothing from the treatment and the machine will not touch them. The most important thing is that you lie very still for treatment.
Treatment is given daily Monday to Friday. A course of treatment will be up to one week. Your treatment schedule will be decided by your haematology/transplant team and confirmed on your first visit to the radiotherapy.
Before TBI, your treatment must be carefully planned. Your first visit will be to the radiotherapy planning pre-treatment department for a TBI planning CT scan. This involves the radiographers positioning you in the most comfortable but practical treatment position.
The treatment position will involve you lying on your back with your arms positioned across your chest. Support pads will be placed under your knees. The staff will take several measurements and then perform the CT scan. No special preparation is required for the scan. Once the scan is complete the radiographers will mark two specific points on your pelvis. These are alignment marks to ensure each treatment is accurate. The marks are permanent and are done by placing ink on the skin and then gently scratching the surface of your skin with a fine needle. The whole planning process takes about 30 minutes.
TBI treatments occur twice a day. The first TBI treatment is scheduled for 08:30am on a Monday morning, or 09:30am if there are two TBIs. The second treatment will be at least six hours later. You will have six or eight treatments over three or four days. It all depends on the type of bone marrow transplant you are going to have. The transplant team and doctors will inform you of this.
Your named nurse, or the ward, will have been given the times for you to attend for treatment. You will be given anti-sickness medication to take approximately 30 minutes before each treatment.
The radiotherapy treatment involves you lying on a special couch, in the same position as when you attended for the TBI measurements. There will be radiographers in the treatment room checking the measurements to ensure you are in the correct position. All that we ask is that you remain still and let the staff move you.
Once you are in the right position, bags of Vaseline® are placed over your feet, between your ankles and knees, and over your neck. These bags are to ensure the radiation treatment is evenly distributed throughout your body.
Special measuring devices will be attached to various parts of your body (over your clothes) with tape, for each treatment. These small devices monitor the dose you receive throughout your treatment. After checking you are comfortable, the staff will leave the treatment room.
Treatment is delivered to each side of your body. Once one side of your body has been treated, the radiographers and physicists will rotate the couch 180° and treat the other side. Treatment takes approximately 10 minutes from each side. You will not feel anything during treatment, and the radiation will not hurt. You will only hear a buzzing noise when the machine switches on. The radiographers are watching you all the time on closed circuit television monitors, and members of your family can speak to you via an intercom system.
If you are uncomfortable or feel distressed at any time, treatment can be interrupted, and the radiographers will enter the room to resolve any problems. The entire procedure, including setting up and treatment will take about 45 minutes.
During treatment we recommend that you wear light, loose clothing, such as T-shirts, shorts, or track suit bottoms. Any clothes with metal fasteners must be removed. Jewellery, watches, and glasses will also have to be removed.
Online music is available in the treatment room, and you can choose which music you would like to listen to during treatment.
Your clinical oncologist will discuss with you how the TBI will affect you in more detail. However, there will still be plenty of opportunity to talk about anything that you feel needs further discussion.
There are side effects that start during treatment. They gradually get worse during treatment and for a couple of weeks afterwards and then get better after several weeks. Late effects can develop months or years after treatment has ended. The main side effects that occur during TBI are:
Skin changes
During treatment there are usually no skin reactions. However, towards the end of treatment you may notice that your skin may redden or darken, depending on your skin colour. You child may get some dry peeling of the skin which may become itchy.
During treatment we advise that you wash normally using warm water and the soap products you would normally use. Gently pat the skin dry with a soft towel.
Radiotherapy skin reactions cannot be prevented, but to minimise any skin irritation we recommend using a moisturiser of your choice. Use the moisturiser frequently and gently smooth it on to your skin until it is absorbed. You do not need to wipe the moisturiser off before treatment, but please do not apply moisturiser immediately before treatment. If you do not use a moisturiser, speak to the radiographers and they will be able to suggest a few options.
If your skin becomes irritated stop using the moisturiser. You will be referred to the radiotherapy review team for appropriate skin care.
Avoid exposing the skin in the treatment area to strong sunlight or extreme temperature changes during treatment.
Feeling sick
TBI can make you feel sick. You will be given regular anti-sickness medication to take before each treatment, so this is not usually a problem. However, if you are still feeling sick it is important to inform the team, so that you can be given more medication.
Parotitis (swelling of the salivary glands)
The salivary glands often swell up soon after the treatment starts. This can be uncomfortable but can be controlled with mild painkillers.
Dry mouth
This usually occurs two to three days into treatment and can last up to three months following treatment completion. This can be helped by drinking plenty of fluids and performing regular mouth care as instructed by the nurses. It is important that you drink plenty of fluids, between one to two litres a day. This can include water, squash, or hot drinks.
Sore throat
A sore throat and gullet can be a problem, starting about seven to 10 days after the treatment finishes. It can make eating and drinking difficult for a week or two. Painkillers will help.
Diarrhoea
Diarrhoea often occurs 10 –14 days after the treatment starts. Medicines and fluids can be given to help this. It may last for a week or two.
Hair loss
Many patients may have already experienced total body hair loss due to chemotherapy. If you have a full head of hair prior to the TBI, there will be complete hair loss about the third week after treatment. The hair usually starts to grow back about three months after treatment.
You may wash your hair gently, using warm water and shampoo. When drying, use a soft towel and gently pat the scalp dry. You may also use a hair dryer on a cool setting or leave the hair to dry naturally. Brush and comb their hair gently using a soft brush or a wide rounded-toothed comb.
Tiredness
Tiredness is a very common side effect of treatment. You may feel more tired and have less energy than usual, both during and after treatment. Do not worry, this is normal. The tiredness is usually at its worst near the end of treatment and for several weeks afterwards. Do as much as you feel you can and rest when you need to. However, gentle exercise has been found to improve energy levels in patients. Please talk to your clinical team if you are struggling with tiredness. They can refer you to physiotherapy and occupational therapy for practical tips and advice.
Pneumonitis (inflammation of the lung tissue)
The lungs are especially sensitive to radiotherapy. In a few patients, inflammation can occur in the lungs within a few weeks of finishing treatment. This may cause shortness of breath and a cough and very rarely can be life threatening.
If this occurs it must be reported to the doctors, BMT co-ordinators, or specialist nurses immediately.
At your first treatment appointment the radiographers will discuss the treatment with you and explain any possible side effects you may experience. They will see you every day and ask how you are and how you are feeling.
Late side effects incurred during treatment can appear to develop months or years after radiotherapy has finished. They are the hardest to predict and, unfortunately, when they do occur, they are permanent.
Cataracts
The development of mistiness of the lenses of the eye can occur because of unavoidable radiation to the eye. This usually develops three to four years after TBI treatment. As treatment is now given over several days the formation of cataracts is less common. However, if cataracts form, they can be removed by a simple surgical procedure.
Lung function
There may be some long-term effect on your breathing. This is very unusual, but if it occurs it tends to be noticeable on moderate to severe exercise only. After treatment you will have regular lung function checks in a dedicated follow-up service. It is very important that any patient who has received this treatment never smokes, especially if he/she has received chemotherapy as well.
Heart
Radiation to the heart can eventually cause later problems with function and/or rhythm disturbance, particularly if radiotherapy is given with certain chemotherapy drugs. This will be monitored closely in a late effects clinic.
Kidneys
Both radiotherapy and chemotherapy may affect the kidneys. We are careful to minimise the risk to the kidneys but often cannot avoid them receiving some radiation. Your kidney function will be closely monitored at follow-up.
Decreased thyroid function
The thyroid gland, in the neck, can be affected by the treatment. It may become underactive or overactive (very rarely) many years after treatment has finished. It may occasionally become swollen or lumpy.
Your thyroid function will be monitored by regular blood tests and examinations. If a dysfunction is detected or if you experience a swelling or fatigue (symptoms of an underactive thyroid), or weight loss and hyperactivity (symptoms of an overactive thyroid) it can easily be treated.
Fertility
Most patients who undergo TBI and BMT will become infertile because of the doses of chemotherapy and radiation given. Women may experience vaginal dryness and premature menopause. Men may suffer from a decreased sex drive. The BMT team and the radiotherapy doctors will discuss these issues with you.
Splenic dysfunction
If you have received radiotherapy to the upper abdomen or lower chest there is the possibility that your spleen may have been irradiated. The spleen helps the body fight against bacterial infections. The spleen is very radiosensitive, and radiotherapy can have an impact on splenic function in the future. The higher the dose received, the higher the risk of splenic dysfunction. Patients with a dysfunctional spleen are at an increased risk of severe, life-threatening infections such as pneumonia, septicaemia (blood poisoning) and meningitis.
If you are at risk of splenic dysfunction your consultant will discuss this with you and what this will mean for you and the family. You may need to take lifelong antibiotics, may require prophylactic vaccinations, may have to carry a card to alert health professionals to the risk of infection and be educated as to the potential risks of overseas travel and the risk of infection.
For up-to-date patient information on splenic dysfunction and a health alert card please visit the following links:
https://
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Second malignancy
Very rarely, patients who have received TBI treatment may develop a secondary tumour some years later. The radiotherapy doctors will discuss this risk with you.
This booklet deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family are just as important. Having treatment can be deeply distressing for some patients. Within the radiotherapy department there will be access and support from the radiotherapy review team, the Macmillan information and support team, and the treatment radiographers. However, if you feel you require further medical or emotional support, you can be referred to a variety of health professionals who can help with any worries or difficulties you may be having.
All the staff are here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. We will try to help you with any questions or problems you may have.
Any side effects you are experiencing will continue for some weeks after treatment has finished. The side effects may become worse before they start to improve. This can be very worrying for patients. We expect the side effects to worsen, but please be assured they will gradually settle. Please continue to follow the skin care advice you have been given by the radiotherapy team until your skin returns to normal.
Radiotherapy Reception
t: 020 3447 3700/3701
Radiotherapy Review Team (via Radiotherapy Reception)
t: 020 3447 3700/3701
Out of hours oncology advice number (available 24 hours)
Mobile: 07947 959020
If you have any concerns that you would like to discuss in confidence, please contact our PALS (Patient Advice and Liaison Service) for information and advice.
t: 020 3447 3042
e: uclh.
Further information
Leukaemia Care
t: 08088 010 444
w: www.
Blood Cancer UK
t: 0808 2080 888
w: www. bloodcancer.org.uk
Young Lives vs Cancer (formerly CLIC Sargent)
t: 0300 330 0803
w: www.
Macmillan Cancer Support
t: 0808 808 0000
e: cancerline@macmillan.org.uk
w: www.
Cancer Research UK
t: 0808 800 4040
w: www.
Maggie’s
w: maggies.org
Live Though This (LGBTIQ+ Cancer Support)
w: www.
Life After Cancer
w: www.
Shine Cancer Support
t: 07804 479413
e: hi
w: shinecancersupport.org
Trekstock
t: 020 4541 7601
e: hello
w: www.
Carers UK
t: 0808 808 7777
e: adviceline@carersuk.org
w: www.
NHS Choices
w: www.
UCLH cannot accept responsibility for information provided by other organisations.